Time for a TOS life update

Hello fellow TOSers!
I have not blogged about my journey with TOS much this year.
I went back to work the beginning of 2015, and over the past six months have worked at trying to adapt the work setting to accommodate my TOS issues - to no avial.
Just recently I threw up the white flag and gave up trying...with this particular job (office work).
I am not deterred from continuing to try to find something that I can do, as I still feel I have a lot to offer and can be a productive employee.
As you all know, finding just the right job that won't aggravate TOS symptoms is quite a challenge.
Never the less, I forge ahead!

I am back in physical therapy just this week, after several months away.
I must confess, with the attention I've been paying to my job, I have totally slacked off on the exercises I'm supposed to be doing at home...and as predicted, had a huge flareup just a week ago.
Nothing motivates me to get back to staying ontop of doing my exercises and regimen that works for me to keep symptoms as low as possible like having a flareup of pain knock me on my ---!

Thoughts of applying for disability have floated through my mind.
For now, the mountain of looking for work is one I can face.
The mountain of trying to get disability I'm not prepared to climb just yet.

Gentle hugs,

~Robin

A Reluctant TOS Prayer

I stopped referencing 'God' or spiritual things after my first few posts because I want everyone to feel welcome here. 
That being said, today I want to share with my fellow TOSers something that has become a great help to me in living with TOS. 

After hearing about my continuing struggle with TOS, someone challenged me to spend some time with the well-known Serenity Prayer. 
Initially, I had to approach it as more of an inspirational mantra, because the very first word of the prayer (God) tripped me up.
Getting past the idea of asking for something from a 'God' I am not so sure is A. concerned about my pain, or B. trustworthy, is hard for me. So I skipped the first word for a while and daily read the prayer, meditating on its meaning for my life.  Does it ever apply to living with TOS!

Everyone who lives with an ongoing pain issue, like TOS, faces things that are not in their control, that they cannot change. 
Your body has betrayed you and gone haywire. 
You endure sleepless nights and foggy days, restless with pain, and wonder what the heck you did to deserve this. 
You try everything you know hoping for pain relief; consult medical and alternative practitioners, tests, surgery, therapy, shots, medications, gadgets, lotions-the list could go on, and still the pain remains. 
It's frankly been infuriating to me that I can't just rip out the cause of the pain and get on with life. 

Thoracic Outlet Syndrome backed me into a corner. There was nowhere to go to get away from the pain, which tapped into my stubborn streak. I pretty much unplugged from faith and life over the last few years. I've used pain as an excuse to not do or go or participate. 
The more I've withdrawn, the more the pain has intensified. I ate to stuff my feelings. Pity-parties with chocolate, donuts, cookies in-hand were happening daily. I gained a lot of weight, which exacerbated TOS symptoms. Add in some prescription medications and their unpleasant side effects and I was a depressed mess.

My daily thoughts were about how angry and resentful I was about being stuck in the grip of this insidious pain. My faith turned into questions and doubts. 
Watching TOS affect the lives of my kids has been heart breaking. Three of us dealing with TOS in one family?! It seemed to me 'God' must be cruel, unreliable, and cold. 
New symptoms on top of the usual TOS appeared; ear, head, and jaw pain. Instead of driving me toward humility and faith, the pain became a wall between me and anything that might touch my spirit. 
Thoracic Outlet Syndrome weighed down my life in every way. 
I'd become a different person, someone I didn't like. That is the state I was in when a very wise woman handed me a copy of this prayer.

After spending some time sitting with the prayer on my lap, reading and thinking, it became clear to me I was at a crossroad. I have been in desperate need of some "serenity, to accept the things I cannot change". 
Would I choose to continue on my life journey with TOS and take the path that leads to my life being taken over by this monster, or would I choose to go another direction, one that requires engaging in my life again? Would I choose "courage, to change the things that I can"? 

A thought occurred to me, that just maybe that bit of scripture that says"...the kingdom of God is within you..." is true concerning the things in this prayer. Serenity, courage, and wisdom are already inside me and I simply need to summon them.

Lately, I've been including the first word of the prayer. That word comes with a lot of questions, and honesty about my disappointments. Over time, my faith is being renewed.  It's looking a lot different than it used to back when I thought my requests would be fulfilled in my favor (according to 'Gods' will) as long as I asked fervently enough.

I'm learning to be ok with the mystery of 'God', and with admitting I can't fix my broken self with myself. However, I can tap into the reservoir of courage and be better, change the things that I'm able to change.

I only see and understand this life in part, and I need discernment to know when to relax and not try so hard..."wisdom, to know the difference".
It's all a work in progress, a journey. But the view on this part of the path is improving, hopeful, even healing.

I hope this well-known prayer may be a source of encouragement for my fellow TOSers as you each choose, bit by bit, one day at a time, how you will live with this TOS companion.
You all inspire courage in me. 
I wish I could take the pain and fix it, for all of us. 
But just maybe this struggle is making us into people with resilience and fortitude that this world desperately needs.

Gentle hugs~

5 Year Ribaversary

I have not blogged about my TOS journey recently because I've been going through the rounds of doctors, once again. I was hoping to have more to report by now, but I'll get you caught up The Days of My TOS Life. I have a new family doctor, so I had to fill him in on my history and recurring symptoms.
 He sent me first to a new pain management doctor-who gave me a list of my treatment options: 1. Do nothing. 2. Radiographic workup (tests & scans). 3. Physical management, (physical therapy, TENS, OMT-osteopathic manipulation, home exercise program). 4. Medication management-(nsaids, antidepressants, muscle relaxants, anti-convulsants, opiod, topical). 5. Epidural steroid injection. 6. Medial branch block. 7. Radio Frequency Ablation (burn the nerve endings). 8. Spinal cord stimulator, implant. 9. Surgery. A pretty depressing and scary list. I left that appointment feeling pretty deflated.

I asked for trigger point injections with lidocaine, one at base of my neck, and one where it feels like a knife it sticking in my back. The doctor informed me there is a risk of lung puncture with the deep shoulder blade injection, so I chose to just get the neck injection, which hurt a lot for two days after, then helped relieve pain for about 10 days. It's back to the usual tense, sharp pain now.

 I revisited my new family doctor, and after chatting, he seemed to agree that pain mgmt doctor was not the best choice for me. I was prescribed gabapentin and referred to an ENT-ear nose throat specialist. I'll backtrack a bit here to explain why he referred me to an ENT. The most painful symptoms that led me to being dx with TOS and having rib resection were neck, jaw, ear, head, arm, upper back/shoulder blade pain. Surgery was successful in alleviating the arm pain for a while, but most of the pain has returned.

So, the ENT examined my ear, numbed my nose/throat and scoped my nose throat-took pictures even- all normal.
He thinks I feel a lump when swallowing because my muscles are very tight, spasming, and there is a hyoid bone in your throat and my muscles are too tight around it. The ENT's thinking is that my symptoms are possibly from having muscle removed when the rib was resected. He referred me to a physical therapist who has had great results with TMJD,  and head/ neck injury patients.

 My therapy assessment was a week ago. The therapist seems knowledgeable about TOS. He believes exterior muscles in my neck are overcompensating, and interior muscles are lazy and not working properly. He also mentioned that I healed post op with tight pecs and rounded forward shoulder, which pulls on muscle in shoulder blade. (It IS all connected!) He commented he thinks the origin of my pain may be located at the level of the cervical rib, where the wad of upper trap muscle is that gives me fits . I decided to hold off on starting the gabapentin until I saw what p.t. was going to be like.

I had terrible arm pain for about 12 hours after the assessment. The first therapy session was 24 hours ago, and during therapy all was well...lay on heat, a little work in/under shoulder blade, some massaging type work on neck and head. I was given my first 'exercise' to do at home. I am to lie flat, and slightly tilt my head up and down. The tilting movement does not start in the neck-at the base, but up higher. I'm supposed to barely tilt my head up and down a half inch, but focus on the movement being up higher than usual. (I wonder how many calories that 'exercise' burns?)

I left feeling good. I ran an errand, and on the drive home an hour later, I pulled over to pop 800 mg ibuprofen and cried the rest of the drive home because my arm, neck, ear, back hurt SO much. The paring knife in my back changed to a meat cleaver, and shooting electrical jabbing pains were up my neck and head, down my aching arm.
For me, when my pain level ramps up past 4-5, my brain does not function well. I'm grumpy, touchy, unable to make clear decisions because all I hear, feel, see is pain-pain-pain-pain. It's like the pain short circuits my brain. I hate that.
I am curious to see what the therapist has to say about my reaction to the first session. I have gone to many rounds of therapy, chiropractors, massage therapists. And I've made myself stick with each one for weeks and months, pumping machines, using thera bands, stretching, enduring myofacial stretching (painful!) hoping for positive results. Mostly, that all just caused me a lot of unnecessary pain.
That said, I have hope that this p.t. knows TOS and the accompanying muscular issues, and may be able to help me.

Now, I just have to get past the mental hurdle of the fear of increased pain (from my past experiences with all the p.t.) so the current therapy stands a chance at being effective.

For me, that includes choosing to have hope that life will get better, that pain will decrease, and function will improve. I will do my best to fight off the urge to feel like a TOS victim. I will continue to look for ways to be a TOS survivor....along with all my fellow TOS survivors. I love and appreciate you all for your genuine understanding, and the way you show compassion to others who are hurting because you DO understand.
 My heart goes out to each of you as we live this TOS journey together.

Gentle hugs to each of you~

Stop the TOS bus, I want off.

I titled this blog Redheads TOS Journey with the idea in mind that life is a journey, and if you keep moving, you never know what is just ahead, around the corner or out of sight-but it is up there waiting for you. Keep on moving forward, one step at a time, yes, lugging baggage along with you, but moving forward nonetheless.

Can I just say, after dealing with this for so long, and then learning my children have this baggage to carry through life as well, watching them suffer...I am over the metaphore.
Give me a chair to sit in, enough moving forward bullcrap. I just want to not think about what I can't or shouldn't do because it will make my pain flare up. I want to not have to be mindful and aware-I want to not think about TOS, or tests or doctors or surgery.
I want to just stop. I want to dump this crummy baggage.

End of the year updates 2013

First, much love and appreciation for those who have contacted us and expressed questions, thanks, and shared their own TOS journeys with us. It means more to me, to us, than you know to be able to share this journey with you and hopefully encourage each other along the way.

So the daughter and I trekked to a University hospital a week ago so she could get the testing that I was supposed to get. I let her jump the line because I think she needs relief more than I do, and because I'm a mom.

She had EMG, nerve testing, very painful, needles poking around to test nerve function. The frustrating part was the person doing the EMG commented they "...do not really believe in all this 'TOS' so much..."  Which makes me flippin' crazy. I reminded my daughter that technician is not a Doctor, so they can have their opinion, but its not worth so much.  (Images borrowed from google).

Then we waited around two hours to go for CT scan, laying on stomach with arms overhead, head facing one direction. The scan was with contrast, which if you've had done you know has interesting warm sensations as it goes through your system and leaves you jittery afterwards (actual picture of daughter with contrast stuck in her arm below). They had to turn her over when the scan was done because her arms were numb. Not a great day for the daughter. Now we wait til early January to go back for more tests and the Doctor consult.

This physician, (I am told by a fellow TOSer who was kind enough to share their experience with me from the facebook TOS group-thanks!), does remove the cervical ribs, and he does utilize supracervical approach. This is good news because our previous Doctor uses transaxillary approach and we wanted a different opinion, to see if removing the cervical ribs would be preferable.
So...here we go, contiuing down the TOS road in 2014. Scary, but I just keep hoping for relief, and ya' gotta have hope.
Gentle hugs to all our fellow TOSers! We will keep you updated on this journey.

They're baa-aack!?

One member in our family of three with TOS - the daughter- has been experiencing recurrence of pain. We obtained updated xray and MRI recently, and requested a copy on disk to take home.
Our mouths dropped open when we saw what looks to us to be a fully formed, regrown first rib...which was *removed* years ago.
*We are not radiologists, with no experience reading these test images....but it sure looks like the rib grew back.
We are flabbergasted.

**Update--We got a copy of the xray that was done immediately after rib resection and compared it to the new xray, and sure enough...the whole rib is now present where it was once just a stump.  Not cool.
I'll post the pics after our second opinion consult.

We are told it takes forever to get into the specialist we are waiting to hear back from for a second opinion on the situation. When we know more, we will let you all know about the next step in this TOS journey.

Some interesting information I've run across online about rib regrowth...

http://www.drbrantigan.com/physician/multidetector.htm
"... the first rib has regrown..."  (shown in CT scan pictures).

From this article- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/
"...patients with recurrent TOS symptoms for removal of rib remnants and regenerated fibrocartilage..."

"The primary technical factor involved in recurrence seems to be incomplete extirpation of the rib during the first procedure. If a rib remnant is left (as most surgeons outside of our group do), osteocytes, chondrocytes, and fibrocytes grow from the end of the bone and produce fibrocartilage and regenerated bone that compress the nerves."  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/

Flareup's are so inconvenient

I recently returned home from traveling over a thousand miles to see my grandsons, sixteen months and newborn. It wound up being an extended trip with lots to do. Unfortunately, I did not listen to the TOS advice I give to others, nor to the signals my own body was giving me.

I over did it.
There was so much to do, much that I do not normally attempt.
Lifting, carrying, bending, reaching, playing.
I just couldn't resist. It was all such fun!

Until that darn pokey, pinchey, pulling, needley, burning, jabbing, searing pain from my ear and neck down through my traps and into my arm. It got really bad.

A doggone flare up.

Just when I needed to be able to make the most of what little time I get with my precious little guys who are growing up so far away, that dreaded irritation and pain surged intolerably.

I had to employ every trick and tool I've learned to fend off a plunging depression.
I admit, the pain pushed me to an emotional edge. I vented a bit, with tears.
Pain has a way of purging the truth out of you like nothing else can.

I was sad, knowing I needed to take it down a notch and slow down, even though I didn't want to.
But I also knew I would be no good at all for anyone if I didn't take care of myself and pay attention to what my body was telling me.
I heated up my microwave rice pack, dropped in a few drops of lavender essential oil, took muscle relaxer and pain pills, got out my mp3 player and listened to some Ease Pain sessions, then some light piano music.
I had to make myself rest.
I proposed my problem to the facebook TOS group. The responses were wonderfully warm, supportive and helpful. Exactly what I needed, a word from people who understand because they've been there.
"Get down on the floor. Let the kids crawl in your lap, no lifting, do the best you can and let the rest go."

That was wise advise indeed for this TOSer.  I tried to heed the advice, though it was really hard for this new grandma to always comply.

The Uncertainty of TOS

Never knowing...
when or how it will begin, again
with the slightest move
just the wrong way
or from doing too much
carrying a heavy bag
wearing a heavy coat
and the ache begins
a tugging in my bones sort of pain
slight at first
but the familiar sign
of things to come
a cascade of effects
that begins to unravel
from a simple sneeze
or a wobble when walking on ice
pressure from a seatbelt
a change in the weather
unconsciously sleeping in a bad position
now the throbbing has returned
I feel my spirits sink
the pain wraps around my mind
surges through my neck
my jaw, my arm, my head, my back
Pain changes my plans
for the day, maybe for weeks
now, the struggle is not so much with pain
as it is with the emotions it brings up...
unable, weak, dependant
victim, angry, burdened, defeated.
Stops me in my tracks
Yesterday, and the day before
no one would have guessed
Odd how you can learn
to live with a level of pain and dysfunction
and not really notice it
Today, suddenly, out of the blue
I am laid low once again
back in my chair
back on pain meds
back to blaming myself for this fluke
for not doing enough therapy
for not being careful enough
like it is my fault
that my body is this way
out of my total control
with a mind of its own
I have no choice, backed into this corner
so I slow down
I breathe
there is no 'doing' now, only being
getting through it
enduring until another day
I remember somthing I once heard
that the rings of a tree show signs of struggle
in years of drought or stress
and that growth comes after
In the stillness now, I sense something new
even in the midst of the pain
courage, depth, compassion
resilience, insight, dignity, wisdom
I ask myself the question-
who would I have been, without the pain?
shallow, vain, hurried
callous, unseeing, impatient, unaware

In that understanding, lies the treasure.

A Day in MY Life With Thoracic Outlet Syndrome

It is 6:48 am. My dog is staring up at me over the edge of the bed, whining and doing her potty dance. I roll to get up off my chiropractic mattress and realize I should not have slept with that pillow last night.

My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out. I attempt a 'systems check', turning my head slowly, left and then right, and back to the left, bending my arm and rotating slowly at the shoulder.

Feeling pretty good this morning, I think to myself.

Mind you, this is compaired to having constant ear, neck, jaw, back, and arm throbbing for several years due to Thoracic Outlet Syndrome before my right first rib was surgically removed through my armpit. Yes, compared to that- I think I'm feeling pretty good this morning.

While the dog does her morning business outside, I get the coffee started; half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I recently decided I had no choice but to chop off my long hair. The weight of it all was just too much for my weak and grumpy neck muscles that have to compensate postop from having been partially removed.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not fully rebound postop. Turns out that having a large mans hand in that small space stretching out your nerves complicates things a bit.
Did I get it on? I wonder.  I have to actually watch myself smear it on to be sure.

Before I head out the door I take a deep breath and wash down some pills, stuff my cell phone in one pocket, my little pocketbook and keys in the other pocket, and head out the door. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really; cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and I cannot bear that. So I compensate, and pray as I drive with my seatbelt sortof on that God might protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor-per state law- stating that I need to adjust my seat belt for medical reasons, and have begun using a belt clip that holds the belt away from my neck.)

I get a text from my daughter, who is away at college. She wants to followup with the surgeon soon because she is having recurring symptoms since her resection in 2005. Both our kids also have Thoracic Outlet Syndrome due to cervical ribs (an extra set of ribs in the neck) and have had a rib removed through their armpits too. We have comiserated about our numb armpits. I sigh as I read her text, breathe a little prayer and make a note to call the doctor when I get back home.

After my apointment, I stop at the grocery store. I've gotten used to parking far away from the store, out where I can pull through two parking spaces so I don't have to wrench my neck around to look behind me to back out of a parking space. A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non-resected TOS side prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk. I know from experience that the weight of several pounds of milk hanging from my arm would definitely pull down on my neck and shoulder, squish nerve,s and set off that darn chain reaction that does not stop once it starts up. It also makes my hand turn a nice shade of blue; and blue doesn't match my outfit today -so I'll just grab a cart.

I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience has taught me that I am always just one too tight hug away from a flare up of nerve pain misery.

The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. My physical therapist would remind me that awareness is key in managing my symptoms.  I must always be aware of what my body is telling me. Listen. Pay attention. I have to do regular mental systems checks. Is my posture off? Is my head turned slightly to one side?  It is definitely a juggling act to live with TOS.

Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.

The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing by letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring? What adjustments will need to be made?

Whatever it brings, I'm just thankful I've gotten this far along on the journey, even with TOS.

TOS...it's complicated.

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids - son and daughter, have the same condition and how it has affected our lives. I blogged my way through healing from rib resection, and my continuing journey...with TOS.

The Labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

Some days are just too much-Juggling 104

When you have TOS, there are lots of things to be mindful of in managing your condition so your flareups and pain are kept at the lowest level possible.
In previous articles here, I have discussed some of the things we can be aware of so we can adjust where needed.
Some days, however, it can all get to be too much.



We mind our posture, do our range of motion exercises, and tuck our chins.
We avoid lifting and carrying, we loosen our bra straps and stop carrying bags slung on our shoulder.
We drink our water, we read and learn all we can about TOS, we ask questions.
We learn our limits and try our darndest to stick to them.
We hate it but we must talk about our physical situation with our loved ones, in hopes they will be understanding and even supportive.
We warn-"Be careful hugging"-sometimes no hugging at all-too painful, though they do not really understand. How could they unless they walked a mile on our TOS shoes?
We massage, we heat, we ice, we apply creams and take pills.
And then tomorrow, we will start all of this, all over again.
It can be exhausting, and to top it all off then we hear from a well-meaning person-"Well gee, you don't look sick."
Sigh.
My fellow TOSer, I gently pat you on the back and say-I know.
This thing is trying, frustrating and difficult.
Maybe sometimes we need to drop all the stuff we think we need to juggle so we can reassess and just pick up the balls that are most important and let the other ones go.
We just do the best we can each day, and keep trying to juggle our way through on this journey with TOS.

A day in my life with TOS.

It is 6:48 am.
My dog is at the edge of the bed, whining and doing her potty dance.
I roll to get up off my chiropractic mattress and realise I should not have slept on that pillow last night because now an ache travels down my neck into my back and all the way down my arm with just the lightest little throb.
My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out.
A few attempts at turning my head slowly, left and then right, and back to the left, bending my arm and rotating at the shoulder. A systems check if you will. "Feeling pretty good this morning", I think to myself.
Mind you, this is compaired to the constant ear, neck, back, and arm throbbing I had before my first rib was surgically removed through my armpit two years ago because I'd been living with constant arm pain due to Thoracic Outlet Syndrome. Yes, compared to that I think I'm feeling pretty good this morning.
While the dog does her morning business outside I get the coffee started, half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I will be driving today, a good half-hour from home, so as I get myself around for the day I know I must wear my hair down. Putting it up would force my neck into a position while I'm driving that would cause my neck to cramp, nerves to pinch and arm to ache. So today I will brush it back and reconsider chopping it all off.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not grow back postop.
"Did I get it on?" I wonder. I have to actually watch myself smear it on to be sure.

Before I head out the door I wash down some pills, stuff my cell phone in one pocket and my little pocketbook and keys in the other pocket, and head out the door. Sigh. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really, cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me with one of my thumbs as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and that I cannot bear. So I compensate, and pray as I drive with my seatbelt sortof on that God will protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor stating that I need to adjust my seat belt for medical reasons, and I also ordered a belt clip that holds it away from my neck.)

After my apointment I stop at the store. I've gotten used to parking far far away from the store, out where I can pull through so I don't have to wrench my neck around to look behind me to back out of a parking space.  A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non resected TOS arm prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk.  I know from experience that the weight of several pounds of milk hanging from my arm, pulling down on the cervical rib bones in my neck will cause spasms, possibly pinch off blood flow, which makes my hand a nice shade of blue. Carrying milk would definitely squish nerves and set off that darn chain reaction that does not stop once it starts up. Besides, blue doesn't match my outfit today -so I'll just grab a cart.
I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience is that I am always just one too tight hug away from misery.
Later in the day I hop online to check a few things, propping the laptop up on pillows or books so I don't have to look down.
The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. Awareness, as my physical therapist would remind me, I must always be aware of what my body is telling me. Why is that pinch in my neck there? Listen. Pay attention. I do a mental systems check. Is my posture off? I notice my head is turned slightly to the left as I'm watching tv.
I need to change where I sit so I am directly in front of it.
Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.
The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing my letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring?What adjustments will need to be made?
Whatever it brings, I'm just thankful I've gotten this far along the journey, even with TOS.(Thoracic Outlet Syndrome)

Still on the TOS path...

I can do more than before, but not without consequence.
The stern speech my surgeon gave me about "Not doing repetitive arm motion, or overhead, or heavy lifting or else..." runs through my head every time I pick up the pruning clippers, or pull down on the garage door, or push-mow around the house.

Believe me, I pay for doing those things with increased inflamation and pain.
But life goes on and things need doing.

The side I had the resection feels good.
The side that still needs it feels tight inside-which would only make sense to a fellow TOSer. It's achey, lightly throbby, comes and goes.
It is liveable for now.
I just DREAD having that surgery (most especially the recovery) again.

I think about an elderly woman I cared for once, back when I did home-caregiving.
She'd had knee surgery years before, and it was striking to me the difference.
Her knee that had been operated on was great, held her weight, gave her no pain, no trouble. Her other knee however, was a constant source of pain and kept her from enjoying life.
"I should've had it taken care of years ago like my other knee", she told me one day.
"I know I should have, but I just didn't want to and now what's the use, I'm too old for that."

Yes, that moment, that conversation, that vision of her two knees, one good, one so painful that kept her from living...it runs through my mind when my arm/neck throbs.

I know....I know.